TheBrownAlbino
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Hello Everyone,
My name's Shane.
This is odd for me, I don't usually talk openly about my epilepsy other than to close friends and relatives.
Im 19, a high school graduate and a store clerk. I live in Raleigh, NC.
I had my first grand mal in the orthodontists chair when I was 12. During the episode, I thought the nurse accidently dropped something in my mouth and I was choking on whatever it was. I tried screaming, I tried moving. All I remember is my eyes wondered and fluttered across this strange womans face and I passed out. The paramedics told me I had a seizure. I never felt those horrible feelings before. I thought I died.
I remember that day so vividly. I have break through seizures about every 2-3 months. I've been on 8 different medications at various doses and combinations. I've seen 4 different doctors.
I mark my calender, from the day I have one, I jump 2 months ahead and write, "maybe not this time." I'm waiting.
The waiting is what really gets me. I'm sure all of you know what it's like to have the feelings of anxiety and fear.
I keep active, doctors orders. Yet, I can't keep the thoughts from rushing me. Bombarding every sense - sometimes I'll smell something that'll remind me of an episode and immediatly panic.
I'm scared of stairs, heights, everywhere but my room. I stay active though. Probably not as active as I should. I started smoking when I was 15. Not the healthiest of choices. I do get out, with friends mostly. I live in a town that has luxuries that aren't accessible unless I drive. There aren't cheap taxi services or buses. I rely on friends and family to tote me around town. I almost put pressure on myself, I hate myself a little for not being about to have the freedom of driving, not having the freedom my peers have.
The thing I hate most is the look. My last episode was at school. A few weeks ago, I was walking to a class. The class I had next was TA, I'm a teachers assistant and usually sit in a quiet room and grade papers. Today I was in the room with my teacher and a few of my friends - they skip class sometimes to hang out with me and Ms. Lameck. Ms. Lameck is fun and energetic, a really great person. I had that feeling. That "aura." I still don't fully understand what doctors say about having that aura. It was described to me as maybe a weird taste or smell or feeling. All pretty vague. I can't describe my warning, I just know it. So I start panicing, then I start thinking "no I'm just panicing, breathe - good I'm breathing, now tell everyone why you jumped out of your chair and ran around the room." But I could speak. Then came "The look." My mind races now, I'm staring at a young girl, Kat, she is the most chipper person I know. There's always a smile on her face, and when she's not smiling she's probably asleep. I'm staring at her, and she's staring at me. In my mind I'm saying things like "I'm trying to tell you I'm having a damned seizure" "can you hear me?" and it all repeats, I don't know why it repeats, I've asked, no one has answered. Then I remember I thought about breakfast when I finally passed out. I awoke, Kat was gone, my teacher and the school secretary had me in there arms in the hallway floor. I remember how I got there. BUT THE LOOK came again. Before and during the seizure it's the LOOK of WHAT THE HELL...After the seizure it's the LOOK of WHAT THE HELL, THAT POOR THING - with some tears. I HATE THAT.
I get those looks everytime.
I wonder, does anyone else think of odd things during episodes? Do your thoughts repeat over and over during episodes? Does anyone else not understand what doctors say when they talk about "auras" and "warning signs?"
I don't really have warning signs, every knew doctor I see asks me that, and I say "if they were really warnings, don't you think I'd steer clear of the whole thing altogether."
Does anyone else feel trapped, disabled, but feel bad about calling it a disability because there are far worse things like aids or paralyses?
Thanks for reading. I feel a little better.
Love Tomorrow,
Shane from NC
My name's Shane.
This is odd for me, I don't usually talk openly about my epilepsy other than to close friends and relatives.
Im 19, a high school graduate and a store clerk. I live in Raleigh, NC.
I had my first grand mal in the orthodontists chair when I was 12. During the episode, I thought the nurse accidently dropped something in my mouth and I was choking on whatever it was. I tried screaming, I tried moving. All I remember is my eyes wondered and fluttered across this strange womans face and I passed out. The paramedics told me I had a seizure. I never felt those horrible feelings before. I thought I died.
I remember that day so vividly. I have break through seizures about every 2-3 months. I've been on 8 different medications at various doses and combinations. I've seen 4 different doctors.
I mark my calender, from the day I have one, I jump 2 months ahead and write, "maybe not this time." I'm waiting.
The waiting is what really gets me. I'm sure all of you know what it's like to have the feelings of anxiety and fear.
I keep active, doctors orders. Yet, I can't keep the thoughts from rushing me. Bombarding every sense - sometimes I'll smell something that'll remind me of an episode and immediatly panic.
I'm scared of stairs, heights, everywhere but my room. I stay active though. Probably not as active as I should. I started smoking when I was 15. Not the healthiest of choices. I do get out, with friends mostly. I live in a town that has luxuries that aren't accessible unless I drive. There aren't cheap taxi services or buses. I rely on friends and family to tote me around town. I almost put pressure on myself, I hate myself a little for not being about to have the freedom of driving, not having the freedom my peers have.
The thing I hate most is the look. My last episode was at school. A few weeks ago, I was walking to a class. The class I had next was TA, I'm a teachers assistant and usually sit in a quiet room and grade papers. Today I was in the room with my teacher and a few of my friends - they skip class sometimes to hang out with me and Ms. Lameck. Ms. Lameck is fun and energetic, a really great person. I had that feeling. That "aura." I still don't fully understand what doctors say about having that aura. It was described to me as maybe a weird taste or smell or feeling. All pretty vague. I can't describe my warning, I just know it. So I start panicing, then I start thinking "no I'm just panicing, breathe - good I'm breathing, now tell everyone why you jumped out of your chair and ran around the room." But I could speak. Then came "The look." My mind races now, I'm staring at a young girl, Kat, she is the most chipper person I know. There's always a smile on her face, and when she's not smiling she's probably asleep. I'm staring at her, and she's staring at me. In my mind I'm saying things like "I'm trying to tell you I'm having a damned seizure" "can you hear me?" and it all repeats, I don't know why it repeats, I've asked, no one has answered. Then I remember I thought about breakfast when I finally passed out. I awoke, Kat was gone, my teacher and the school secretary had me in there arms in the hallway floor. I remember how I got there. BUT THE LOOK came again. Before and during the seizure it's the LOOK of WHAT THE HELL...After the seizure it's the LOOK of WHAT THE HELL, THAT POOR THING - with some tears. I HATE THAT.
I get those looks everytime.
I wonder, does anyone else think of odd things during episodes? Do your thoughts repeat over and over during episodes? Does anyone else not understand what doctors say when they talk about "auras" and "warning signs?"
I don't really have warning signs, every knew doctor I see asks me that, and I say "if they were really warnings, don't you think I'd steer clear of the whole thing altogether."
Does anyone else feel trapped, disabled, but feel bad about calling it a disability because there are far worse things like aids or paralyses?
Thanks for reading. I feel a little better.
Love Tomorrow,
Shane from NC